Friday, September 30, 2011

Sharing Our Burdens...

Where did the day go? The boys and I were so busy from morning to night that the day just flew by!!

Right after breakfast, Miss Stephanie came by for Occupational Therapy. I was so excited that she liked the gift we got Gavin for his birthday...and even more excited that she was able to use it therapeutically!! With a weight on Gavin's arm, she had him turn the gears giving his little arm a real workout. I hadn't even thought to do that - brilliant!

After Stephanie left, we had a quick lunch and then the three of us headed to see Dr. Trish. When I initially made the appointment, it was for me and Gavin. But since I was alone with the boys, I had to bring Brian. Bringing Brian meant that I couldn't really get treated - I didn't want to take my eyes off him for too long in her office! So I asked her to treat Gavin and Brian today and I sat on the sidelines and watched.
They were both so good during their treatments. Gavin chilled out on the floor watching a movie and Brian had a great time playing with the toys from her toy box.
At the end of the session she told me something that I found quite powerful. As I mentioned before, I have been having some issues with my legs. In the morning, especially, it feels like they won't hold me up. And during the day they've been very achy. Well, during the boys' session today she said she was drawn a lot to their legs to release energy. She said she often felt when she was working on them that her legs may not hold her up. I told her that's how I've been feeling, too! She explained to me that children and their Mothers often share energy. Kind of like the boys and I are all carrying each others stress and worry and it's manifesting itself in leg pain or weakness or whatever. I physically take on the boys pain (metaphorically speaking) - and vice versa. Sounds crazy, I know. She also said she released a lot around Brian's throat chakra - an obvious sign to her that he has been working hard with his speech issues.

I thought about these things all the way home. On one hand, I felt so bad. Since Gavin's eye surgery back in January, I really got out of my routine of seeing Dr. Trish for sessions. I wasn't taking care of myself - and now it shows. To think that me not taking care of myself is possibly affecting my children - well, that was a wake up call. Just another reason why we, as Mommys, need - NEED - to take time for ourselves. We can't do it all, be it all, carry it all - and expect to be 100% for everyone. It's not healthy. I need to start taking care of me so I can take better care of them. I also started to connect some things. For the past few weeks Gavin has been very resistant to use his legs. When I try to get him to stand up by holding onto his hands - he just collapses. And forget trying to get him to take steps! I thought of what Dr. Trish said...about how she felt and released all kinds of blocked energy in the boys legs. I made a mental note to remind myself to keep an eye on Gavin for any improvements after today.

Well, I didn't have to wait long. We got home just in time to greet Miss Wendy for Physical Therapy. She couldn't have been more pleased with Gavin's walking today. He walked holding her hands...he walked using the shopping cart...
...and he stood at the table while she helped him play with a toy that usually scares the crap out of him. He was instantly different.

Coincidence? Maybe. But it's still fascinating to me. And it was the kick in the butt I needed to start getting my body back in order. I owe it to Gavin and Brian.

I'm taking the day off from blogging tomorrow...but I'll be back on Sunday with news from Gavin's birthday party!!

Thursday, September 29, 2011

Happy Fourth Birthday, Gavin! (Part two)...

Happy fourth birthday, Gavin!!
Today was a fun day with you. You were so happy all day long - showing your cute little dimples left and right!

The morning started off with Mommy's traditional birthday wake up. It's like the every day wake up, minus the sign and the "Happy Birthday" song!


After getting dressed, I revealed your birthday present. We got you the "Turn and Learn Magnetic Gears" from Lakeshore. We paired it with the "Stand-Up Magnetic Design Center."

You love to spin things. When these gears are connected - if you spin one, they all spin! It's bright and colorful and could be a great therapy tool. There are a multitude of ways we could play with this! Your little brother loves it, too!

Your Daddy, brother and I love you so much, Gavin. There's not a day that goes by that you don't make us smile...


There's not a day that goes by that you don't make us proud...



There's not a day that goes by that I don't think about where you were...and how bad it was at times...


...and feel enormous pride that I birthed such a strong, determined, courageous child.


There are some days that I worry that I'm not the Mommy I thought I would be...


But, Gavin, there's not a day that goes by that your little smile...and your incredible accomplishments...make me remember that you made me the Mommy I needed to be.

You saved my life in so many ways. And there's not a day that goes by that I don't thank God for entrusting your life to me.

I love you, Bugaboo. Happy, happy birthday.

Love,
Mommy

Oh, and p.s.! Your birthday video will debut on Monday - we want your birthday party footage to be included!

September 29, 2007...Part One

The Doula was lined up...the coming home outfit was washed and ready for our new baby...the birth announcement was chosen and all I needed was to email her a photo and the "stats". I was finally off bedrest and in the home stretch. But then I found out that Gavin was breech...that he had enlarged ventricles in his brain...my OB thought we should schedule a C-section. I chose the date October 8 - Columbus Day - the anniversary of the date Ed proposed to me. Even though I wasn't getting the natural birth I planned on...everything seemed...perfect.

September 29th, 2007 I started having contractions. And then my water broke. Ed was out in the driveway washing the car when I told him and he quick grabbed our stuff and we rushed to the hospital after I forced him to take one last photo of my belly.

I didn't have a blog at the time - it was months before I even started my CaringBridge page. What follows are personal writings that have never been shared. Emails to family or friends or posts in an online pregnancy support group I was in at the time. Reading through these today brought me right back to the day of Gavin's birth and the weeks after. Despite the smiles you'll see...I was never so scared in my entire life.

This photo was taken in Gavin's nursery before we left for the hospital. I wanted one last belly shot. My smiles says, "I'll be back in this nursery in four days nursing my newborn son." Little did I know what was in store that same evening...



September 30, 2007

Hi Everyone!

Gavin David Leong made his dramatic and early entrance into the world on 9/29 at 8:43pm. He is 5lbs, 7oz and 19 inches long. He is just gorgeous and we honestly feel like we witnessed a miracle when he was born. Gavin will need to spend several days in the NICU as he had breathing issues that are already starting to resolve, thank God! I had to have a C-section as he was in an extremely unusual position....sideways and belly up almost in a back bend! The doctor had to do some serious maneuvering to pull him out so Gavin is very bruised...and Mommy is extremely sore. He said he's never seen a baby present like that in his entire career....leave it to me to be the first!!

We will send pictures when we can. I will be in the hospital for four days and hopefully Gavin and I will go home together. Ed and I are just thrilled...our lives forever changed in an instant. If you have any extra prayers, feel free to throw some baby Gavin's way!!

With love,
kate & ed.


Date: Thu, 4 Oct 2007 19:35:45 -0700
From: kmg41470@yahoo.comSubject: News from Kate, Ed & Gavin Leong...
Hi everyone,

I just wanted to let you what's been going on with us. As you know, our son Gavin was born on Saturday evening, September 29th. I came home yesterday, October 3rd but I had to leave Gavin in the Neonatal Intensive Care Unit. It was probably the hardest thing I've ever had to do.

Gavin was born early at 37 weeks, but is acting more like a 34 week baby. He was on a CPAP machine for the first two days of his life because he was struggling to breathe on his own. That was removed and although he still has issues with breathing, he's doing a lot better. He also has a feeding tube in his nose because he's having trouble eating. He just can't master sucking and breathing at the same time....they feed him through the tube when he tires out during a bottle feeding. He had to have a central line inserted in his scalp (which was just taken out this morning) to get fluids and antibiotics. He also developed jaundice which he is receiving phototherapy for. That is also improving.

Gavin's position inside me was very very strange. My doctor said he was squished in there like a sardine...he was practically doing a backbend and his face was smushed up against my side. His head was flexed back very far. His poor little head will take some time to mold back into a normal shape - it's a bit misshapen right now. His nose was practically flat to his face when he was born...but it pops out more and more every day!

Many of you have called or written to ask about me, about Gavin...some of you know I'm home, some of you think he's home.....thank you for caring and inquiring. Since I came home we haven't really had the energy to talk to anyone. We spend most of our time back and forth to Paoli hospital to spend time with Gavin in the NICU. I'm pumping and he eats every three hours. We don't always make it there for every feeding....but we try. So, what I'm trying to say is - we're spent. Please understand if we don't answer the phone or return your call. It's emotionally draining to re-tell stories over and over to different people. We really don't know when Gavin will come home...more than a week from now for sure. They're taking it day by day. I guess he came when he wanted...and he'll come home when he wants!!

The best way to contact us is through email....we will try our best to respond, but please understand if we can't. It's a really tough time for us...emotionally and physically. We'd appreciate prayers!!
I'm attaching some pictures of our beautiful "Chirish" baby. It's hard to believe that he'll already be a week old this Saturday!!

xo
kate.


October 13
private message


I really need to bring my son home. He is two weeks old today. It devastates me to leave the hospital every night without him. If I see one more dag gone husband walking down the hall with a car seat...there to pick up his wife and child...I will lose my mind. Gavin was starting to make some progress and then yesterday he TOTALLY regressed with his eating. He had to be tubed the majority of the evening and all day today. It broke my heart. I don't feel like a Mom. Yes, I'm there ALL the time at the NICU and I change him, *feed him*, bathe him...I bring in clothes and bibs and hats and his own burp cloths. I clipped his nails and brush his hair and read him books. But these are all things I should be doing AT HOME!!!!!!!

I need him to be okay. I'm not kidding. Do you know how long it took me to get pregnant? Do you know how long I've dreamed of being a mom? Do you know that I had a perfect amnio? He HAS to be okay. He just has to be. Don't get me wrong...I love him no matter what. As a matter of fact, if he ends up having some syndrome or disorder...or any type of special need...I'm glad that I am his mom. They are re-testing his chromosomes just in case and we may consult a geneticist. They have been suggesting "Prader-Willi" syndrome, but I'm not convinced as he only has a few symptoms...his neck is a bit weak in tone, he has blonde hair and he's not eating well and he has "Simian creases" on both hands.

PLEASE pray for my son. I am sad, I am tired, I am still in pain from my c-section two weeks later, I am worried, I am scared and I am willing to make ANY promise to God as long as he's okay.

Thanks for reading. I needed to get this out.


Sent: Monday, October 15, 2007 7:56 PM
Subject: Update on Gavin Leong

Hi everyone,

We wanted to send a quick update on our son, Gavin, who is still in the Neonatal Intensive Care Unit. It's really our sneaky way of peddling for prayers. After making some progress last week, Gavin has taken a turn for the worse. Saturday he turned two weeks old and was having a real hard time with his feedings. They had to feed him through his nasogastric tube for most of his meals. Sunday morning when we got to the hospital and went to change his diaper, it was filled with blood. Turns out he has a form of Necrotizing Enterocolitis. After a few x-rays, they confirmed that it's not the most serious kind which would require surgery to repair a perforated bowel. We're still waiting on test results to come back, but they think it's a severe form of colitis. He's back where he started in the NICU on the most critical bed, and can't eat for the next several days, if not the whole week. Just when we were getting the hang of feedings!! It's heartbreaking to see him get hungry and know there's nothing we can do.
On a more positive note, Gavin had some other tests that have come back positive. He had a normal brain MRI and today had a normal echocardiogram on his heart. They were concerned for a bit that he had a hole in his heart. Everyday it's something new...something overwhelming....something else to "google" and obsess about.

Love,
kate.


October 24, 2007
Private Message

Thank you from the bottom of our hearts for all the prayers and positive thought waves sent our way. After 28 days....after 672 hours....after 40,320 minutes - all of which are equal to an ETERNITY...our son is coming home Friday!!! We've endured countless tests, a real medical scare, sleepless days and nights and countless drives back and forth to the hospital. We've had well intentioned nurses tell us when and how we should hold our child, we've changed diapers and tended to Gavin through port holes in an incubator, we've learned WAY more than we ever cared to know about nasogastric tubes and cpap machines and necrotizing enterocolitis (yeah, I know...try saying that three times fast!) and we got too used to seeing our son with tubes and wires everywhere. This journey certainly wasn't what we envisioned when we found out we were going to have a baby 9 months ago...but the end result is better than we could have ever asked for. We're just thrilled to finally bring him home.



10-26-2007 11:54 PM

Private Message

I just got home from the hospital a little while ago - it is 11:50pm. I was there from 8am. The doctors were really unhappy with Gavin's eating yesterday and decided that he's not getting enough. They told me not only can he NOT come home for a few days (or more), but that if he doesn't pick it up to their satisfaction that they'll have to re-tube him. I was devastated. I stayed there all day and did every feeding. Didn't help that two people that came in after me were discharged today as I sat there - bawling my eyes out.

Thank you for thinking of us. Sorry I spoke too soon....maybe I jinxed myself.

My baby will be FOUR weeks tomorrow. *sigh


GAVIN IS HOME!

FOR REAL!!!!







10-28-2007 01:38 PM

I just finished feeding him in my own living room. We are so thrilled....but strangely terrified. This experience has, at least for me, shaken my Mommy Mojo. I just hope that he thrives and defies all the odds. Please pray that ALL genetic tests come back negative and all the speculation was just that...speculation.

To be continued...

Wednesday, September 28, 2011

On The Verge Of Four...

Tomorrow is Gavin's birthday. Four years old. On the eve of his big day, our superhero is gobbling down Minestrone in a tomato sauce with beans, rice and tons of green vegetables for dinner. Show off, eh? It takes him a while to chew and swallow these more advanced textures which give me time to type in between bites! He was on fire today. This morning, during Brian's therapy, the two of us escaped to my bedroom and he blew me away with his iPad skills. Yes...I think he's ready to graduate to four. I'm so proud of him.

Brian's teacher, Miss Christi, was the only therapist here today. I decided to try hiding with Gavin to see if Brian's behavior was different. My experiment worked! It seems that I bring out the worst in Brian - but I think I've always had that affect on boys. *wink* Christi remarked that he did a great job making choices using his words and also following directions. He even said things like, "1-2-3-GO!" and "Ready-Set-GO!" on his own during their play!

I'm almost ashamed to write this - but since when has that ever stopped me from writing anything? I'm not well, physically, at the moment. Ugh. I sort of feel like I did almost two years ago when I was being tested for Rheumatoid Arthritis and Multiple Sclerosis. For the last few mornings I have woken up feeling terrible - achy, shaky and like my legs won't hold me up. On top of that, I feel like I've had no sleep when I sometimes sleep for over 8 hours. On top of that, I've had a temporary crown on one of my teeth and it has been causing me terrible jaw pain. And on top of that, I've been nauseous every day from the birth control pills they have me on in preparation for IVF. This morning it all came crashing down. It was the worst I've felt in a long time. I decided to call the doctor who was most concerned about my aching legs. His concern was for blood clots so he told me to stop the birth control pills immediately. He's hoping that this will resolve the issues - especially the nausea - and we'll just hope for a period to come on it's own this cycle. I am devastated. All I can do is pray that this doesn't screw up this IVF cycle - which is our one and only cycle covered by insurance. The stress if rather overwhelming. Ugh Ugh Ugh. He suggested I run over to the E.R. to get checked out - but I declined. It seemed a little extreme. I'm going to see how I feel off the pill for a few days and hope and pray I start to feel better.

I had a little birthday party planned for Gavin tomorrow morning, but I canceled it. First of all, I now have an emergency dental appointment on my son's birthday - not exactly how I wanted to spend his morning. But I also didn't think I could handle it right now. I need some recovery time. So we rescheduled it to Sunday afternoon. Luckily that worked for most everyone! I feel just terrible. Why now - on Gavin's birthday?? Ugh Ugh Ugh Ugh.

But, the show must go on - as much as it can. This little boy has had an incredible year and he deserves to be spoiled tomorrow as much as possible. I can't wait to give him his gift - and reveal it here to all of you! It's pretty cool.

Gavin's journey to three was so exciting. The biggest celebration for me that year was watching him cruise the coffee table by himself one day. That moment made carrying my camera around 24/7 so worth it. It was also the year he started horseback riding...taking steps with a walker...and it was also the year he said goodbye to his sister, Darcy Claire. As I re-watched his birthday video from last year, it brought me to tears several times. I made last year's video as a bit of a tribute to all of you. I absolutely believe that much of Gavin's progress is because of the many, many people who love him, support him, cheer him on and pray for him. This third birthday video is proof that it is all paying off. Watch...you'll see.





Tuesday, September 27, 2011

Got Milk?...

Today was a little rough. I woke up feeling like I had the flu - but I don't. I had such severe arthritis pain I actually felt sick. Ed helped me get the kids ready for breakfast before leaving for work, which was a big help, and then I was very grateful to Miss Katja for stopping by for a few hours this morning to help, too. From 9-11 I escaped to my room, something I so rarely do, so I could sit down and try to shake it off.

I came down just in time for Brian's teaching session with Miss Christi. Gavin and Brian woke up in crabby moods, so I was a little nervous about how it would go. The first half didn't go so well - Brian cried and wasn't cooperating. But then he came around and they ended up having a nice time together. He was quiet, but she remarked that he is doing a better job labeling objects that he sees and hears.

I definitely notice a new and exciting independent streak in both Brian and Gavin. All of a sudden, both of them are wanting to do more "big boy" things. Today, Brian flat our demanded to start drinking out of an open cup. At first, it went a little like this...

But it wasn't long before he got the hang of it!

Every time he took a drink, he'd have a look of such pride on his face.

Not to be outdone, Gavin tried drinking out of a different cup today, too. In therapy, Miss Maggie is working with Gavin on lip closure. An important skill for feeding and speech. One idea was to use a hard straw - we chose the 'Take and Toss' cups. Gavin tends to use his teeth to bite and suck the milk up the soft straw in his cup. The hard straw would force him to close his lips around it and suck. We tried it with him today and, like most new things, he was not too happy with the change.

He calmed down and let Maggie try...and try...but he never really did get anything up the straw.


She also used bubbles with him. She'd catch one on the wand and while I stood behind him and pushed his cheeks so his mouth would pucker, she would break the bubble on his lips. The idea was to get him aware of his lips and hope that he'd pucker in anticipation of the bubble coming towards him.

Gavin's birthday week continues...and today, I am remembering his journey to two! This was probably Gavin's biggest year yet. He met his brother...we experienced a miracle with him (no really, we did! You'll have to watch to find out...)...he had some MAJOR physical accomplishments...and he blew his therapists away. This was the year that confirmed to me that there was really no stopping this child. And I also realized that no matter what we did - or how many times we tried something with him - Gavin was a child that would do everything in his own time. And that was - and will always be - okay with us.

So grab your tissues - and prepare to laugh and cheer - as you watch "A Meeting, A Miracle and Milestones".




Monday, September 26, 2011

Looking Back At Year One...

Today starts Gavin's BIRTHDAY WEEK!!

This Thursday, my little boy will turn four. I'm having a bit of a hard time believing it, to be honest! For the next four days I will be sharing something special with you from each year of his life. He's the King for this week and, as you can see, Brian knows that Gavin should get extra special attention...

It was just the three of us today. Yep - just me, Gavin and Brian! Can you believe it? I had no one here to help me and I did it all by myself! "Anonymous poster" would be so proud. Or not.

I actually have not been feeling well for the last four days. Every day I have felt nauseous and, for lack of a better description, hungover. It's all from the birth control pill I'm required to take for the IVF process. My body has been seriously revolting and every day I have felt like crap. Today was the worst - I would have loved to have stayed in bed. The boys still have runny noses, too, so we were a bit of a mess today!

Brian's speech therapist, Miss Jen, bravely kept her appointment and when she arrived this morning...Brian was a bit of a wacko. He was bouncing off the walls and then hiding under laundry.
He finally calmed down and they ended up having a good session. He's definitely saying some new words and she noticed!

Gavin did some great eating today! I recently discovered a new baby food at Wegman's. It's called "Sprout". It was developed by chef, Tyler Florence, and it's all organic. I bought several from their advanced stage selection and hoped that Gavin could handle the textures. So far, so good! Last night he had their beef lasagna...and this morning he had multi-grain cereal with fruit.

When I brought Gavin into his bedroom tonight and kissed him goodnight, I could tell that he was exhausted. But Gavin is one that has always fought sleep. I laid him down and he shocked me by instantly putting his head down. So I started to rub his back. Within two minutes he was snoring. You're going to have to take my word on this - this NEVER happens. It nearly brought me to tears to see him 'let go' and close his eyes and fall asleep right in front of me. And as I stood there over his crib watching his chest rise and fall - I started to reminisce.

Gavin's first year had a lot of challenges, but one of the big ones was getting him to sleep. It was so bad that Ed and I had to tag team. One person could rarely start and finish the job. I could literally be walking or rocking or bouncing with Gavin for two or more hours...and then Ed would take over and there were times it was just as long for him. We couldn't just lay Gavin down and leave - he was such a high risk for aspirating at the time and would often get himself so worked up that he'd vomit. Plus, a lot of the time he had a feeding tube in so if we put him in bed awake - he'd surely pull out that tube. That first year was complicated.

But that first year was filled with incredible miracles for a little boy who spent his first month in the NICU, and then a little over THREE months hospitalized and very ill. The big moment that first year - the one that stands out in my memory - was getting him off that feeding tube. When many around me, doctors included, were pushing for a surgically placed G-Tube...this Mommy said Hell No. It was a long, laborious, exhausting, and emotional journey...but Gavin slowly started to eat purees orally. If he did that forever, I'd be happy - but now he's eating beef lasagna and banana chunks and fishy crackers and macaronis. I never lost hope that first year - and I envisioned a lot for Gavin. But he has exceeded even my expectations.

If you are new to this blog, or if you've known us forever - I'd love it if you watched (or re-watched) Gavin's birthday video from that first year. If you're new - it will help give you an idea of what makes him who he is today...what he's been through...what we went through. If you've seen this before but want to walk down memory lane with me tonight, I'd love it. Out of all the videos I've made, this one will always be my favorite. It was my first - and my camera was crappy - but it tells such a story.

And that story keeps getting better and better.
I love you, Bugaboo!

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